Why Health Data Is Good Infrastructure
One of the lessons from Covid-19 is the dangerous risk for our nation created by the gaping divide between public health and clinical care. With little information about their patients’ vaccination status, how can primary care providers help patients overcome hesitancy or find a place to get vaccinated? With no ability to track post-vaccination health, how can public health perform their critical monitoring functions? We need to strengthen and build robust health data utilities that can link and connect public health and clinical data systems. It makes sense to build these data utilities as public-private partnerships in states, tied to the powerful purchasing, regulatory, and public health levers states have.
The evolution of health information exchanges
Health information exchanges (HIEs) across the nation have evolved to meet these data needs. These organizations have always been hubs for clinical data and are increasingly sharing social service and claims data with provider, health plan, and hospital partners. They have evolved from being data “hunters and gatherers”—finding and moving data between healthcare entities—to data “cultivators,” curating and analyzing information across all community partners to produce reports, insights and actionable data. They are public resources that enable government and other stakeholders to achieve shared goals of strengthening public health, addressing equity and improving care.
This is an important role, especially now, as we continue to grapple with Covid-19 . Closely partnered with states, these emerging health data utilities are bringing together clinical information and vaccination records to produce vaccination action lists for providers. They are helping public health agencies monitor vaccinated populations as “breakthrough” infections mount. They are filling in race and ethnicity information when it is missing from vaccination records so that we can track issues of equity. They are supporting health systems and providers looking to catch up on missed preventive care during Covid-19.
Here are two powerful examples of this work. Our network in California recently completed a cohort analysis of four million Californians finding that residents fell as much as 50% behind on preventive screenings and children’s health during the 2020 pandemic. In another example, CRISP, the state-designated health information network serving Maryland, DC, West Virginia, and surrounding regions, partnered with the University System of Maryland (USM) to enable rapid support for students testing positive for Covid-19. CRISP shared aggregate and de-identified student Covid-19 test results with school officials, giving them critical and timely information to maintain safe learning environments for their students and faculty during the pandemic while maintaining privacy.
The robust capabilities, broad data connections, analytic know-how and infrastructure offered by health data utilities will also help us tackle the next big challenge we are confronting as a nation: making healthcare equitable. This will require a much bigger tent and broader definition of interoperability.
It is certain the clinicians and their EHRs cannot tackle healthcare’s vast inequities on their own. We will need the contributions of state governments, social service organizations, community health workers, patients, health plans, housing agencies, and startups and data innovators. Health data utilities must encompass all these players, providing a platform for coordination, collaboration, insight, and innovation that extends far beyond electronic health records and clinicians.
Health data utility infrastructure for shared success
Tim O’Reilly described how government, by creating shared technology and data resources, can become a platform that enables new solutions to be developed by both public and private sector entities. Isn’t this essentially how we want infrastructure projects to work? An initial investment creates open platforms for shared success and further innovation by other Americans, for other Americans. That’s how highways enabled travel and interstate commerce. That’s how the space race led to satellites and to today’s internet-powered lives.
It’s time to fund health data utilities as critical infrastructure and engines for health in our communities. We can support this capacity with a relatively small federal investment and clear accountability requirements. This is a “shovel-ready” project in many U.S. communities — where EHR systems are now in place and nonprofit health information networks have expanded their reach.
Health information networks are ready to support their states as health data utilities and serve as silo busters, connectors, and enablers for the healthcare future we all want. There is no better infrastructure investment to recover from this pandemic, prepare for future public health challenges, and make healthcare equitable.
Claudia Williams is the CEO of Manifest MedEx, California’s leading health data network, and a former senior adviser for health innovation and technology at the White House, where she led health data initiatives and helped launch President Obama’s Precision Medicine Initiative.
This article was originally published as Why Health Data Is Good Infrastructure from Public Health Post.
Taking the idea of health data utilities a step further by including social factors “can help us go beyond our health care-focused approach to improving health outcomes and making important changes in social policy that have been overlooked for far too long,” says Boston University School of Public Health assistant professor, Paul Shafer.
Teams at Boston University School of Public Health are working to mine health and community data to create a more comprehensive index for determining community health. Read more about the new Community Well-Bring Index.
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